Endo Warriors: the song

Hey All,
My very talented friend Casey (author of the blog chancesour.blogspot.com) wrote a beautiful song about what it means to be an "Endo Warrior." I was honored to be asked to sing it, and we recorded it and posted it on you tube. We would love for you to watch it and share it!

 http://www.youtube.com/watch?v=ZTltZ84T-7M

Here are the words: 

People say I’m crazy,

That I’m just not strong enough.

People say I’m lazy,

That it’s time that I get tough.

They don’t understand,

This pain I can’t ignore.

It hurts with every breathe,

I can’t take it anymore.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

 

Surgery after surgery

The many scars run so deep.

And yet it always seems,

Nothing brings relief.

Hard to keep my head up,

Feel so all alone.

Countless hours spent,

With my heating pad at home.

Chorus
I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

Bridge

It’s time we come together and stand as one in pain.

It’s time for once our cries aren’t heard in vain.

If we lean on each other our power will not wane.

 

The mountains I have climbed,

One day you will understand

Then you’ll finally know

How strong I really am.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

And I’ll keep fighting this disease that has completely ravaged me.

I am a warrior you will see.

Endowarrior you will see.

**Please let me know what you think!!**

The Emotional Suffering of Women with Endometriosis

Your friend tells you she has endometriosis. Being the wonderful friend you are, you know just what to do. You go online, type in “endometriosis” and begin to read what you should expect her to be dealing with. Alright, you think to yourself, she has irregular and painful periods.  Continue on to the next line. Oh, that really stinks. She may have some trouble conceiving and I’ll bet she has pain during sex. You read on. Bowel and bladder issues? Fatigue? Wow, you muse, genuinely distraught, I sure am glad I don’t have endo!

Of course you’ll be correct about all those symptoms. After all, when has the internet ever been wrong? And you really are a great friend for caring enough to research what she goes through. Unfortunately for your friend, and for the rest of us who suffer from endometriosis, the internet does not tell the whole story. You see, for every physical ailment that infiltrates the life of a woman with endometriosis, there is an emotional component that is equally, if not more, devastating.

GUILT

Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of the lives of women with endometriosis and makes us miserable.  Some of us feel guilty for just having the endo to begin with, as we erroneously wonder what we did wrong to deserve this disease.  Guilt is common for those of us who are spouses or girlfriends and cannot give our significant others the emotional or physical attention they need. We feel guilty that our close friends and family have to spend their days taking care of us when we are incapacitated. We also feel guilty when we feel as though we are idling around the house while the rest of the world is working hard.  We feel guilty for canceling plans that we made weeks ago, or not being able to make plans to begin with due to pain. Guilt crushes those of us with children when we cannot take care of them the way they deserve to be taken care of. It can sometimes overwhelm us when we are asked to play with our kids or put them to sleep, and we can’t even get off the couch. When we are trying to conceive unsuccessfully, we feel guilty for not being able to give our spouses the children they so desire.  Guilt is a truly ubiquitous feeling in the lives of women with endo.

ANGER

Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endo? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way we feel.

JEALOUSY                                                                                                                                       

For women with endo, jealousy rears its ugly head when we see other people performing activities that we are too sick or fatigued to perform. It is hard not to be jealous of a healthy person when you are stuck in bed, too exhausted to move, or lying on the couch, writhing in pain.  Jealousy is also inevitable when we see other people with their two children, or pregnant with their third while we would give our right hands just to conceive one child. Just seeing someone go food shopping without discomfort causes jealousy within us, as we would do anything to be able to perform everyday activities without pain.

LONELINESS

Yes, many of us are lucky enough to have some sort of support system in our lives. And don’t get us wrong, we are enormously thankful for that support. But there is a profound, hollow loneliness that sometimes overwhelms us when it occurs to us that despite their best efforts, our loved ones cannot fully understand what we are going through. It is impossible to fully convey the physical and emotional turmoil that we deal with on an everyday basis. Even our endo-sisters cannot completely comprehend our individual suffering, as every person suffers uniquely. We are therefore sometimes led to feel as though there is no one as miserable as ourselves, no one going through what we go through.  And there is no thought lonelier than that.

MOURNING/LOSS

There are many women whose lives with endometriosis are full of loss and mourning. On a basic level, any woman who lives with endo might feel that they mourn the loss of a “normal”, illness-free life. For those of us who are prevented from having the spouse or significant other we desire, the loss of partnership is profoundly felt. Women who are trying desperately to conceive but are unsuccessful mourn the loss of their motherhood. Additionally, those of us who have had the miserable but common experience of having a miscarriage feel a deep, inconsolable loss that remains with us forever.  Lastly, women who have had hysterectomies often mourn intensely as they experience personal loss in two ways: the loss of potential children, and the loss of their womanhood.

EMBARRASSMENT

It’s very simple. Endometriosis is a disease that has to do with menstruation, sex and female body parts. Should we be embarrassed when speaking of those things? Absolutely not. Does society teach us to be? Unfortunately, yes. So while we endo-sisters attempt to speak to others about our illness and educate them, we are often met with embarrassed or disgusted looks. And that causes us to be embarrassed about having a disease that we obviously did not choose to have.

DEPRESSION/HOPELESSNESS/DESPAIR

Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. Depression is a very common symptom for those who suffer from a chronic disease, as there is no tangible hope for a cure. For women with endo, depression can be caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. The possibility of us never being able to have children or a family is depressing. Feeling like our illness is misunderstood is depressing. Feeling like we need to be embarrassed of our illness is depressing.  And lastly, the thought that there might be no hope for our recovery, that we might have to deal with the incapacitating symptoms of endo for the rest of our lives is the most depressing thought of all.

FEELINGS OF INCOMPETENCE

Due to the symptoms of endo such as pain, bowel and bladder issues, intense fatigue, and pain during sex, women with endo often feel inadequate. We feel like we lack the ability to do anything important, like our jobs, or household work.  Relationships with our spouses, kids, parents, siblings or even friends are often placed on the back burner as we struggle to merely exist in our difficult lives. This inability to maintain relationships, keep our jobs, take care of ourselves or family members or even have sex with our spouses overwhelms us with feelings that we are incompetent, useless, and valueless. Some of us even feel as though our existence on this earth is pointless if we can’t be functioning members of society. Feelings of incompetence can also lead to depression, embarrassment, guilt, and rage.

So there you have it. Women with endometriosis suffer on two levels: the physical and the emotional. While the physical symptoms are more commonly spoken about and documented, the emotional turmoil that we go through is often neglected. So, the next time you try to give your friend or relative the support she needs and deserves, try to remember that there is a very strong emotional component to this disease that should never be overlooked.

**Are there any other emotional symptoms that you think should be on here? Please feel free to comment and let me know!**

Topics

The following topics are going to be the chapters in my book. I will be having about five to ten women write for each of the topics. I have added questions under each topic to give you some guidance as to what to write about. Remember that they are only suggestions and do not have to be the only questions answered. You can write anywhere from a few sentences to a couple of pages. Try to be original and stay away from just writing your basic story. Instead, try poetry, pros, journal format etc. as they are all great ways to express yourself and tend to be a bit more interesting.

TOPICS TO WRITE ABOUT

1. People telling you that the pain and suffering you experienced was “all in your head”

-How did it make you feel when they said that?

-Who told you that?

-Did you believe them?

-If no, did you fight them on it?

-Did it delay your diagnosis or treatment seeking?

2. The journey towards getting a diagnosis and the day you found out you had endometriosis

 -How did you find out you had endo?

-How old were you when you were diagnosed?

-What made you seek out a diagnosis to begin with-what were your symptoms?

-Was it difficult to get a diagnosis-how long did it take before you were diagnosed?

-Had you heard of endo before you were diagnosed? What had you initially thought it was?

-How did you deal with telling your family/loved ones that you had this disease?

-Did you research it after you found out/was the research what you expected?

-How did you feel: relieved, devastated etc.?

3.  Pain/pain medication

-How would you describe the pain?

-How do you deal with pain?

-What does the pain prevent you from doing/ how does the pain affect your life?

-How do pain meds affect your life?

-What are others reactions to you taking pain meds (family, friends, doctors, strangers…)?

-Difficulty/non-difficulty in getting pain relief?

-How do you feel about taking pain meds?

-Stigma regarding those who take pain meds/being labeled a “druggie”

-Getting meds at the ER or in the hospital

-Alternative methods of pain management

4. Treatment options, hormones and medications

-What treatment options were presented to you by your doctor?

-Which did you decide to do?

-Did you try Lupron? How did it affect you?

-How did the hormones affect you and your life?

-What side effects did you experience from the medications other than hormones? How did they affect your life?

5. Infertility, wanting a child, not being able to conceive

-What emotions do you feel when you are waiting to see if you would get your period?

-How do you feel when you find out that you are not pregnant again?

-How does infertility or trying to conceive affect your relationship with your significant other? Other family members?  Friends? Strangers?

-What does it feel like to be around people who are pregnant or have little kids?

-How do people who know you are trying to conceive treat you?

-What have people who don’t know what you are going through say to you?

-What is the actual experience like when dealing with shots, pills, hormones, ovulation predictors etc.?

-How does infertility or trying to conceive affect your everyday living: job, friendships, finances etc.?

-What has it done to the way you view yourself: self-esteem, self-worth, self-love?

6. Sex/ relationships

-What has endo done to your sex life?

-How do you keep a romantic relationship going when your life is consumed by the endo?

-What methods do you and your significant other utilize to make sex easier/less painful?

-What has it done to your relationships with your significant others, family members, friends, coworkers bosses, strangers?

-When in the relationship do you tell your boyfriend/girlfriend that you have endo?

-How does endo affect your dating/social life?

-What does your spouse think of your endo/ how does he or she deal with it?

-Which relationships in your life have been supportive throughout your ordeal?

-Which relationships were destroyed due to endo?

-How do you like the significant people in your life to treat you?

-What are some things that the significant people in your life do to show that they are there for you?

-Have you made any relationships because of the endo?

7. Hysterectomy

-What made you decide to have a hysterectomy?

-Who of your close family/friends did you consult when deciding whether to have it?

-Did you get a second opinion?

-How did you feel in the days leading up to the hysterectomy?

-How did you feel after the hysterectomy?

-Did you have or want any children before the hysterectomy?

-Do you find yourself wanting (more) children now?

-Is it painful to see pregnant women or women with little children?

-How did your significant other feel about the hysterectomy?

-Do you stand by your decision to get a hysterectomy or do you regret it?

-Did you get a hysterectomy thinking it would ‘cure’ your endo?

-Did the hysterectomy help with the endo/ do you still have pain?

-Did you use hormone therapies after? Why or why not?

-If not, do you have menopausal symptoms?

-How has your life changed since the hysterectomy?

8. Hospitalizations/surgeries

-What hospitalizations have you had and why?

-What does it feel like to be in the hospital because of endo?

-What were your experiences like in the hospital?

-What surgeries have you had and why?

-Were they helpful?

-Did you try other treatment options before you decided on surgery?

-How did you feel before the surgeries? After?

-Did you have any unique experiences with any of your surgeries or hospitalizations?

9. Life with endo

-How has having endo affected your daily living?

-How has having endo affected your job?

-Have you connected with others who have endo?

-Do you have a support system that helps you cope?

-Have you joined any support groups? Do they help?

-How do you deal with being a mother, daughter, wife, sister etc. while having endo?

-What are other symptoms of endo that affect your life (fatigue, stomach issues…)?

-How do those symptoms affect you and your life?

10. Overall words of wisdom

-What words of strength do you tell yourself to help you get through the day?

-What have you learned from having endo?

-What would you tell someone who is newly diagnosed?

-Have you learned anything from other women with endo?

-How do you stay strong when the going gets tough?

-Do you have a faith or religion that helps you stay strong? What does it teach?

The Task At Hand

The following are your tasks, my friend, if you so choose to take them...

BACKGROUND #1

You are living with symptoms that don’t add up to any well-known disease. You have terrible pain either in conjunction with your cycle, or sometimes all the time, pain during intercourse and bowel and bladder problems. Your period is often heavy or irregular. You are constantly fatigued and nauseated, and, to your immense unhappiness, you are having trouble conceiving.

TASK#1

Convince a doctor to figure out what is wrong with you. Go to specialist after specialist and describe your symptoms.  Don’t get frustrated when he or she sends you to a different doctor, saying that whatever you have is not under their jurisdiction. Try not to become overwhelmed when you are sent for MRI’s, CT scans, X-rays, sonograms, and blood tests and they all come back negative. Pretend to be strong when you are told time after time that nothing is wrong with you. Try not to kill the doctor who tells you that your symptoms are all in your head.  

--

BACKGROUND #2

Imagine your abdomen and pelvis are indeed encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away.

TASK #2

 Live with the aforementioned pain for a minimum of one week of the month, and for maximum of every day of your life.  Act normally, smile and say “great” when someone asks you how you are, or carry on a three minute conversation. Perform every day activities, like food shop, or make dinner. Go out with your friends a night, see a movie and try to sit for the full two hours without fidgeting. Go to work and act like all the other employees, make sure no one knows you’re in pain.  Go on a date with your significant other and make love to him or her without mentioning the agony you are in once.

--

BACKGROUND #3

You have been in excruciating pain for the past three days. You’ve tried every method of pain relief possible, from a hot water bottle to heavy-duty narcotics. Nothing has helped.  You are at the point where you would wish you were not alive, and you decide to go to the emergency room.

TASK #3

Wait three hours in the waiting room, writhing in agony until you are triaged and they decided you are in enough pain to earn a coveted bed in the emergency room. Change into gown while you feel like you are going to pass out. Next, drag yourself over to the bathroom to ensure that you get your all-important urine in a cup before you even dare to think about receiving pain medication.  Stumble your way over to your bed and try to hold your screams in while you are prodded and stabbed with an IV needle.  Wait another hour before a doctor actually saunters over to you like he has all the time in the world. Try to explain to the doctor how much pain you are in, what endometriosis is, and how much medication you need, and then try again after he accuses you of having ‘drug seeking behavior’. Try for the third time after he prescribes Motrin for you instead of the narcotics that you most definitely need. Wait another hour to receive the narcotics you so valiantly fought for. Attempt with all your strength to not yell at the nurse who goes on break instead of getting the pain medication that she promised to get you.  And lastly, continue to be optimistic as you leave the hospital while contorting in agony, no better off than when you came.

--

BACKGROUND #4

Your body feels as though you are nine-months pregnant with quadruplets. Your limbs feel like they are wrapped in lead, and your eyelids covered in cement. All you want to do is climb into bed and sleep for sixteen hours. In addition to the exhaustion, you are immensely nauseated at all times. Every item that you place in your mouth causes you to either become nauseated or throw up.

TASK#4

Make sure that you do not slack off while doing any of your everyday activities. Ensure that you eat enough to keep your energy high. Go to work. Fulfill every task you have there without once slowing down. Do not drink any caffeine, as it makes you sick. Go out to eat with friends but don’t let them know that you can’t eat anything on the menu.  Don’t get hurt when they call you “flaky” for cancelling on them. Play ball and horse around with your children, if you are fortunate enough to have any. Feed, bathe and dress them and put them to bed. Ensure that they are unaware of your exhaustion. Spend time with your significant other without yawning. Sleep six hours a night, wake up refreshed and repeat.

--

BACKGROUND #5

You are tried for many years to conceive. Despite numerous medications and shots, intrauterine inseminations and in-vitro fertilizations, you still remain childless.

TASK #5

Pretend to be happy when your friend is pregnant. Paste a smile on your face and hug her without letting your jealousy and anger emanate through. Jump up and down and scream when your sister or sister-in-law has a baby and jump at the opportunity to baby sit whenever you are asked.  Continue to spend as much time as you can with all your pregnant and parent friends and ooh and ahh over their children’s pictures when they are shown to you proudly. Never, ever let it slip that you wish you had one of your own.

Make sure that your relationship with your husband remains sensual despite the constant need to plan sex. Don’t let your sex life become all about getting pregnant, and try not to remind him that you are ovulating when you are making love. Try not to focus too much on the all the money you have spent on trying to become pregnant. And don’t allow yourself to become too disappointed when you get your period every month.

Would you choose any of these tasks if it were up to you?

Endo Warriors

Hello all. This past Sunday I went to a support group led by a group of women called the Endo Warriors. These meetings, led by three unbelievably knowledgeable and capable women, are a medium in which women with endometriosis can join together to give and receive emotional support. Seeing such an eclectic group of women gather together to help each other is both inspiring and uplifting and each time I'm there I find myself amazed at the amount of strength and inner beauty these warriors have.  I leave each meeting feeling like I am fortified with enough unconditional love, knowledge and support to last a lifetime. I am so proud to call myself an Endo Warrior.

Empowering
Novel
Deeply dedicated
Outrageously
Wonderful
Awe-inspiring
Resilient and strong
Readily available
Immensely knowledgeable
Overwhelmingly supportive
Radiant, powerful
Sisters.

a little business...

Hey guys,
I just wanted to let you all know that if you are interested in donating some money for my book, you can donate at: http://www.gofundme.com/2cun6g . Anything and everything is incredibly helpful and appreciated!!
Rachel

Minor Details

For me, and many women that I have spoken to who have endometriosis, a difficult part of living with endo is the feeling that everyone around us is busy changing, growing and enjoying themselves while we remain unchanged, just trying to focus on making it through the day. Sometimes, it's as though the world is turning while we stand still...

Minor Details. The little things in life that are often left unnoticed. The middle toe on my daughters foot that’s bigger than her big toe, the way my son’s fine blond hair forms a triangle at the nape of his neck,  and a birthmark, no larger than a grain of barley, on the inside of my husband’s ear. Those tiny little oddities, undetectable unless deliberately searched for, that individualize every person, situation, and object.

 

I’ve been noticing the minor details a lot more often these days. All of those imperceptible building blocks that make up each part of my life with endo. The way I blink twice as often as usual nowadays since I am inexplicably and unbearably exhausted. The exact way I can curl my body while lying on the couch so that the pain that courses through it becomes a tiny drop less agonizing.  The way the crack on the ceiling that I stare at for hours when I am bedridden looks just like a bunny. And the way my daughter’s smile falters, just slightly, when I tell her for the umpteenth time, that I don’t feel well enough to play with her.

You see, when the world passes you by, second by second, minute by minute, as you lay glued to your couch or bed in a fetal position, you begin to notice the little details in your life that have changed without your involvement. You suddenly become aware that the tree that stood bare and severe yesterday has grown a tiny, fragile bud, and it occurs to you that you completely missed a winter of building fat snowmen and drinking hot chocolate while you screamed hysterically in pain.  You notice that your son is tying his own shoe and a stab in your heart reminds you that someone else taught him to do it while you slept the day away.  You observe the tiny orange-brown freckles on your daughter’s nose, and realize that it is summer, and your daughter graduated preschool while you lay in a hospital room receiving IV narcotics.

Minor details can be used to create depth and dimension to make life a little more beautiful, giving a sense of individuality and uniqueness to every person and object. But for me, it is through the little details that I comprehend the harsh and painful truth about my life with endometriosis: as the world changes and morphs consistently and predictably, as my family grows, develops and improves with each passing minute, I remain stagnant and unchanged, fighting for the day in which I will notice each miniscule detail of my life and feel proud that I was involved in creating them.